Helpful Tracheostomy Information

Trach-ties

Things I have learned along the way.

To answer some common questions first.......

No...having a tracheostomy doesn't hurt...well it does a little after they upsize the tube, but not for long.

Yes... you can go in tubs and hottubs .... we just have a lower high water level than most.

Yes... you can take a shower without drowning....its is creative somtimes or just use a hand held shower head to make it alot easier.

Yes... we can go out in the rain and still look up if we need to without drowning like the old wives tale about turkeys.

Yes... I will cough alot...but don't fear...I will keep breathing no matter what colors I turn.

No ... I won't cough out the tube as long as my trach holder is intact. On the rare occassion I do cough it out it can go back in again.

Yes .. I need to cover my neck more than my mouth if I happen to cough or sneeze.

Yes ... we can wear regular necked clothing if it is loose enough, but others prefer "V" necks.

Yes ... people with tracheostomies can talk if they have vocal cords that work. Those of us who may not be able to talk, our hearing is just fine.

Can someone with a tracheostomy smell? The answer is yes and no. Those who can still breathe some around their trach have a good ability to smell. Those who
do not breathe up through their nose and mouth have some sense of smell but it is diminished. Others with trachs say they can "taste" things before they can smell them.

Yes....we can wear a seatbelt when in a vehicle...it is more comfortable with a child's safety belt device that slides on the belt to help direct the shoulder strap off your trach. ("H" clips will work also...just not as comfortably)

Yes ... there are things that can help cover a tracheostomy ... trach bibs ... bandanas ... scarfs (cotton or silk....don't want to get any lint into your trach!)...as my son said when someone asked..."oh she's just making a fashion statement"

Yes ... there are special things that I carry with me when I am away from home that most people wouldn't carry.

TRAVEL KITS

Don't leave home without one.

When anyone has a baby ... one of the first gifts they get is a diaper bag to carry all the "essentials" needed for the new little one. In many ways those with special needs also need to carry "essentials" in an easy to carry bag.
Just to give you a reference ... my "travel kit" has many of the essentials I need. I have a converted soft sided cooler which I use for my kit. In it are an "inverter", which gets plugged into my cigarette lighter or other power outlet
that converts the power from the car battery to something that my equipment can plug into. It is powerful enough that I can run my BiPaP with it if needed.My nebulizer is also in the bag in the event that I should need to have a breathing
treatment. Along with that is all the medicines that are needed for that. I also carry a couple trach cleaning kits,a couple extra HME's, extra cotton tip applicators, a bottle of saline, a bottle of peroxide, the set ups for my nebulizer,
the saline "bullets" (the small 3 ml containers of saline), and a cellphone. Taped to the inside of the lid is my "Emergency List"...which includes my allergies, medicine list, my physician's name and phone number, and any notable physical conditions.
This all fits into that one bag! It is always ready to go.

Others that have other special needs carry ambu bags or other essentials they may need that are particular to their specific needs.
One thing that everyone should take along is a package of baby wipes. Even if you don't have a infant with you. Baby Wipes have many
good uses just for traveling. As well as a bottle of drinking water. You never know when you will need fresh water when the baby wipes
are just not the trick. What you need to do is find what you need and make a kit like this to grab to take along in the event that you
have to leave quickly for whatever reason, or so that you don't have to go around collecting everything as you are trying to get ready to
go somewhere.

Trach tips

It may be time to suction or cough if...........You sound like a honking goose.

You sound like a whistle ring when you breathe.

You are louder than an obscene phone call.

You are making popping sounds.

You sound like a bubbling fish tank.

You feel there is something there and you just can't get it up.

If at all possible, unless you have a condition which does not allow it, it is advisable to attempt to cough before suctioning.

It may be time to clean it if........

You cough or suction and it still sounds the same.

You can't get the suction catheter into the trach tube.

It is recommended that you clean your trach atleast once or twice a day...make it part of your routine ...like brushing your teeth.

When or how often you clean your trach or change it is truely an individualized decision. it depends alot on the person that has the trach
and what factors they have which can influence how often they need to change it. Where someone with a trach for sleep apnea, who has no underlying lung disease can go 24 hours without cleaning theirs,
someone with a trach and lung disease who has lots of "gunk" in it may need to clean theirs more often to prevent infection. The longer secretions sit in a trach the more the chance of infection. From personal
experience if I have lots of secretions I can sometimes have to clean it as often as a couple times an hour! Other times I can get away with twice in 24 hours. The biggest thing is to realize when this needs
to be done to prevent infection. There are always bacteria, both good and not so good ones, that "colonize" on a trach. It is when someone gets run down or the bacteria have secretions to over grow in that an infected
state comes about.

My trach has an odor....what does that mean? Each bacteria seems to have a distinctive odor. Pseudomonas, and its sister bacteria Xanthamonas, which is common in people with trachs, smells like old rotten sneakers.
Staph (aka Staphylococcus Aureus) has the odor of an old wet dog, or old urine smell. Serratia and cirtobacter have their own odors as well, like hallotosis. If you clean the trach using peroxide and saline (or sterile water) and the smell continues you may want to keep an eye on other symptoms, such as temperature, the amount and character of secretions,
and how the person feels in general, or how playful a child is compared to their normal activity. Blood tests to check white blood cell count and a sputum culture may be needed if symptoms continue or increase. Most important is to watch to see if things progress.

Disclaimer; In no way are these web pages or links intended to replace care by a qualified medical professional. They are here for information only. If you feel you fit any of the symptoms listed in any of these links you should seek care from a qualified medical professional.

Contact Trach-ties at trachties@gmail.com if you have any questions or suggestions.